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Freedom to be altruistic: allowing for risk/knowledge ratios in decisions concerning multiple sclerosis research

Kenneth Arenson Kenneth Arenson practices law in Toronto.

In their thoughtful criticism of the conclusion by a joint panel of the Canadian Institutes of Health Research and the Multiple Sclerosis (MS) Society of Canada concerning Dr. Paolo Zamboni’s “liberation procedure” for chronic cerebrospinal venous insufficiency (CCSVI), Dr. Andreas Laupacis and Dr. Arthur Slutsky missed an important public policy point: there is an additional, little-developed freedom involved in patient autonomy in Canadian law, which is the other face of the coin of informed consent. Note that I speak of a coin of freedom, not of right. If there is a right, someone is under a duty, and there is no duty on anyone to conduct studies of the liberation procedure. The court would reject a claim for an order against researchers or institutions that such a study be done. The correlative of a freedom—the classic example is the freedom to walk in a public park—is that no one has the right to object. The legal philosophers call this a “no-right” to distinguish it from a duty. In the case we are considering, no researcher has the legal right to omit obtaining informed consent when signing up subjects (indeed, this side of the coin is now treated as a duty of disclosure when the researcher is embarked on a study and is recruiting subjects); similarly, for the obverse of the freedom coin in question, for patients satisfying the requirements for enrolment in a study of the liberation procedure, no researcher has the right to refuse those who choose to participate, as argued below.

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Dr. Andreas Laupacis, one of the co-authors of the earlier article which criticized the CIHR panel as being flawed, is on the Ontario panel looking into follow-up care. He is the only bright spot on that panel.

To have a lawyer write the follow-up article in a medical journal gives me hope. Both articles deal with studies, rather than treatment, but they still both strongly support patient rights

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